Guillain-Barre Syndrome (GBS) Support Group

I was only given simple PT, just a walker and more or less thown to the wolfes. 3 years later I am still trying really hard to live my life with this disease. I'm wondering if maybe I could still get back to myself. To this day I still can not do stairs. I have to worry about going somewhere, if hey have stairs.

i find exercises i have been doing at the therapy pool have been a great help. i was doing then with my rehab at first but now i can drive so i go by myself 3 times a week for about an hour. im also doing exercises at home that i was doing while i was in hospital.i was diagnosed with gbs aug last year.i was in a wheelchair then a walking frame now im on crutches . i use one crutch short distances. fatigue is still a big problem and my reflexes are coming back in my knees but not my ankles.balance isnt very good i fall over if i turn around too quickly. it takes time so try and be patient and keep your sence of humour .zanna x

My case was severe, the axons were destroyed and at 63, I am no longer a kid. Diagnosed on 8 Jan 08.

I was in five hospitals and had a lot of rehab, hospitalized from Jan - Oct 27, 2008, then home (alone am widower). At first it was an effort to sit up. Then, I did stand table from March til April (took 4 ppl to stand me up initially). Once I got in a power chair (May) lot of stepper type machines, lot of mat work and a mini bike. Then they got me up on a platform walker. That was Jun/Jul of last year. It took two ppl to allow me to walk short distances (50 to 80 ft) and I was half lying on the platform walker. My left Knee would buckle regularly. I also had water therapy. In Aug/Sep 08 they got me on a regular walker. All the while I was encouraged to do butt squeezes and things to strengthen my core. Therapists also had me do things like extend my legs and push down with my knees. Was also given a manual wheelchair and while an inpatient was told to take off foot rests and 'walk' the chair around the ward (forwards and backwards), that was to work on quads. Other exercises included squeezing a ball with my knees and using therabands to open my knees. One therapist also had me roll a towel and put it under my left leg while lying down and then to lift my left leg .. or try to lift it. At first I couldn't and it took four months but now I can lift that left leg. They also had me do an exercise where I try to kick out and lift each leg without lifting my knee. Also raising toe and heel while seated.

Last Nov I was able to push up to a standing position. At home I wore holes in the floor with a walker from Nov to March (winter). Got a rollator in April and began to use that outside. Now I can use a single point cane. Today, in therapy, I used the single point cane outside the hospital. Wasn't pretty and was only the second time outside (use the cane inside a lot). Can do steps, not pretty, as of about 2 and a half months ago.

There is progress and I can drive now. But it seems like it took and continues to take forever. If you don't have a therapist who looks for different ways to attack the problem, then try to change therapists. I probably saw 20 to 25 different therapists in the five different places I was hospitalized. Most were good and a few were great. But, there were a few who were clearly just putting in time for a paycheck. If you get one of the latter ask for a change.

I also now have as of two weeks ago a Schwinn Airdyne stationary bike in the garage. Used one in therapy and decided I could do a lot more with this at home too.

Positive attitude is really important. Trying is really important too. Some days (hopefully not too many) will really suck, but as someone told me GBS means getting better slowly. I wish you luck and I hope you might find something useful in what I wrote.

I'm a 29 yrold I was diagnosed with GBS in Dec 08 I had a sever case I was on life support for 3 months and my nerves disintegrated it ate through them. I was a paraplegic for about 3 months. I was in the ICU unit for 2 1/2 months then transferred to a rehab hospital for 2 1/2 months. I'm walking now with a walker and I am able to do only about 4 steps but I need a rail on both sides. I'm getting bored with my O.T.& P.T. does anyone think it's a bad idea to take a break? I'm just so burnt out. They wanted to hopefully do some water therapy in the next few months but I have a bit of vertigo and I can't get in or out of a pool at this point so I feel that it's not worth the frustration of trying something I clearly am not able to do. All suggestions would be much appreciated:)